Ua ib tug niam txiv, kuv nkag siab tias koj lub siab hnyav npaum li cas thaum kws kho mob qhia rau koj tias koj tus menyuam me muaj mob pob txha caj qaum, lossis peb txhua tus paub tias yog 'Spinal Muscular Atrophy' (SMA). Tab sis nrog kev nce qib ntawm kev tshawb fawb kho mob, cov kev kho mob tshiab, zoo heev tau tshwm sim los daws cov teeb meem zoo li no. Niaj hnub no peb tab tom tham txog ib qho tshuaj tshwj xeeb, niaj hnub no. Ntawd yog cov tshuaj hu ua Onasemnogene Abeparvovec.
Hais yooj yim xwb, Onasemnogene Abeparvovec no yog dab tsi?
Qhov no yog lub npe nyuaj me ntsis, tab sis cia peb ua kom yooj yim. Tej zaum koj yuav tau hnov txog cov tshuaj no los ntawm lub npe lag luam 'Zolgensma'. Qhov no tsis yog tshuaj ntsiav lossis tshuaj ntsiav ib txwm muaj. Qhov no yog kev kho mob gene .
Xav txog seb, txhua txoj haujlwm hauv peb lub cev yog tswj los ntawm peb cov noob caj noob ces. Ib yam li ib qho kev pab cuam hauv computer. Hauv SMA, muaj qhov tsis zoo hauv ib qho noob caj noob ces uas ua rau cov protein uas tseem ceeb rau kev ua haujlwm ntawm cov leeg. Yog li, qhov kev kho mob Onasemnogene Abeparvovec no ua yog ntxig ib daim qauv ntawm ib qho noob caj noob ces noj qab haus huv rau hauv lub cev ntawm tus menyuam es tsis yog qhov noob caj noob ces tsis zoo ntawd. Cov noob caj noob ces noj qab haus huv no raug nqa mus rau lub cev cov hlwb nrog kev pab los ntawm ib qho kab mob hloov kho tsis muaj teeb meem (adeno-associated virus).
Qhov tseem ceeb yog tias qhov no tsis yog kev kho mob uas yuav kho tau SMA tag nrho. Txawm li cas los xij, nws tuaj yeem pab tiv thaiv tus kab mob kom tsis txhob loj hlob thiab pab tus menyuam cov leeg kom ua haujlwm thiab loj hlob muaj zog.
Kev kho mob no muab li cas?
Cov tshuaj no yog muab rau hauv tsev kho mob, nyob rau hauv kev saib xyuas tag nrho ntawm cov kws kho mob tshwj xeeb thiab cov neeg saib xyuas neeg mob. Qhov no yog kev kho mob infusion . Ib yam li cov kua saline, cov tshuaj no maj mam muab rau hauv lub cev li ib teev. Kev kho mob no feem ntau tsuas yog muab ib zaug xwb hauv ib sim neej.
Kev kho mob no muab tau rau cov menyuam mos thiab cov menyuam yaus. Pawg kws kho mob tshwj xeeb uas kuaj xyuas tus menyuam yuav txiav txim siab seb qhov kev kho mob no puas haum rau koj tus menyuam lossis tsis haum. Yog li ntawd, tsis txhob txhawj txog nws.
Tej yam koj yuav tsum qhia rau koj tus kws kho mob ua ntej kho mob
Vim tias qhov no yog kev kho mob uas nyuaj heev, nws yog ib qho tseem ceeb heev uas yuav tsum qhia rau pab pawg kws kho mob txog txhua yam ntsiab lus txog koj tus menyuam txoj kev noj qab haus huv ua ntej pib kho mob. Nco ntsoov qhia rau lawv txog tej yam no.
- Yog tus me nyuam muaj mob plawv .
- Yog tias koj tau tshaj tawm txog kab mob siab lossis kev hloov pauv ntawm cov enzymes siab ua ntej.
- Hauv cov ntshavYog koj muaj mob ntshav xws li cov ntshav platelet qis.
- Yog tias koj tau muaj kev tsis haum tshuaj rau cov tshuaj no lossis lwm yam tshuaj lossis khoom noj ua ntej.
- Yog leej niam cev xeeb tub, tab tom sim xeeb tub, lossis pub niam mis.
Kev muab cov ntaub ntawv no kom raug yog qhov tseem ceeb heev rau kev nyab xeeb ntawm tus menyuam.
Tej yam tshwm sim ntawm kev kho mob no yog dab tsi?
Ib yam li lwm yam tshuaj, kev kho mob no tuaj yeem ua rau muaj qee yam kev phiv. Qee qhov yog qhov ib txwm muaj, tab sis muaj qee yam uas peb yuav tsum tau ceev faj heev. Cia peb piav qhia lawv kom meej.
| Cov teebmeem sab nraud | Kev piav qhia thiab yuav ua li cas |
|---|---|
| Cov kev mob tshwm sim loj heev uas yuav tsum tau qhia rau tus kws kho mob tam sim ntawd | |
| Cov tsos mob ntawm kev raug mob siab | Qhov no yog qhov tseem ceeb tshaj plaws thiab feem ntau tshwm sim loj heev. Saib xyuas cov tsos mob xws li daj ntawm lub qhov muag lossis daim tawv nqaij (zoo ib yam li mob jaundice), zis daj/xim av tsaus, quav tsaus, mob rau sab xis saum toj ntawm lub plab, xeev siab, tsis xav noj mov, thiab qaug zog heev. Yog tias koj pom ib qho ntawm cov no , qhia rau koj tus kws kho mob tam sim ntawd . |
| Kev Ua Xua | Yog koj muaj cov tsos mob xws li tawv nqaij tawm pob, khaus, o ntawm lub ntsej muag, daim di ncauj, lossis tus nplaig, lossis ua pa nyuaj, nws yog ib qho xwm txheej ceev. Qhia rau koj tus kws kho mob tam sim ntawd. |
| Kev los ntshav lossis mob nqaij txawv txawv | Vim yog cov ntshav platelets txo qis, kev los ntshav yuav tsis nres txawm tias yog los ntawm qhov txhab me me xwb los xij, thiab tej zaum yuav muaj qhov mob hauv qab daim tawv nqaij. Qhia rau koj tus kws kho mob txog qhov no thiab. |
| Cov cim qhia txog kev kis kab mob | Yog koj kub taub hau yam tsis muaj laj thawj, mob khaub thuas, mob caj pas, lossis hnoos, qhia rau koj tus kws kho mob paub. |
| Cov kev mob tshwm sim uas feem ntau tsis loj heev, tab sis yuav tsum tau qhia rau tus kws kho mob | |
| Ntuav | Koj tus menyuam yuav ntuav tom qab kho mob. Feem ntau qhov no yuav ploj mus li ob peb hnub. Txawm li cas los xij, yog tias nws tseem muaj lossis yog tias koj tus menyuam muaj teeb meem, qhia rau koj tus kws kho mob. |
Yog tias kuv noj tshuaj ntau dhau lawm ces yuav ua li cas?
Vim tias cov tshuaj no raug muab rau hauv qab kev saib xyuas ntawm kws kho mob hauv tsev kho mob, muaj tsawg txoj hauv kev uas yuav muaj kev noj tshuaj ntau dhau. Txawm li cas los xij, yog tias koj xav tias qhov no tau tshwm sim, koj yuav tsum qhia rau chav kho mob ceev xwm ceev (ETU) ntawm tsev kho mob tam sim ntawd. Koj tuaj yeem hu rau Lub Chaw Qhia Txog Tshuaj Lom Hauv Tebchaws ntawm Tsev Kho Mob Colombo National kom tau txais lus qhia yog tias tsim nyog.
Tej yam yuav tsum xav txog thaum lub sijhawm kho mob thiab tom qab kho mob
Kev kuaj ntshav
Ua ntej thiab tom qab kev kho mob, koj tus menyuam yuav tsum tau kuaj ntshav tas li kom paub txog lawv lub siab ua haujlwm thiab cov ntshav platelet rau ib lub sijhawm. Qhov no yog rau koj tus menyuam txoj kev nyab xeeb, yog li nws tseem ceeb heev uas yuav tsum tau kuaj cov no raws sijhawm raws li koj tus kws kho mob qhia.
Kev tswj cov kua dej thiab cov khib nyiab hauv lub cev
Qhov no yog ib qho tseem ceeb heev uas ntau tus neeg tsis tau them sai sai rau. Tom qab kho mob, qee qhov ntawm cov tshuaj no (cov kab mob hloov kho) tuaj yeem tawm hauv tus menyuam cov quav thiab zis rau ib hlis lossis ntau dua. Yog li ntawd, cov tswv cuab hauv tsev neeg yuav tsum ceev faj tshwj xeeb thaum hloov thiab ntxuav tus menyuam cov ntaub so ntswg.
- Hnav hnab looj tes txhua zaus koj hloov daim ntaub qhwv menyuam.
- Muab daim ntaub qhwv menyuam uas siv lawm tso rau hauv lub hnab yas uas kaw zoo thiab pov tseg rau hauv lub thoob khib nyiab sib cais.
- Tom qab hloov daim ntaub qhwv menyuam tas, ntxuav koj txhais tes kom huv si nrog xab npum.
- Yog tias koj tus menyuam cov khaub ncaws lossis cov ntaub pua chaw pw qias neeg nrog cov quav lossis zis, ntxuav lawv nyias nyias hauv dej kub.
Tsis txhob txhawj txog qhov no. Ua ntej koj tawm hauv tsev kho mob thiab mus tsev, pab neeg kho mob yuav muab cov lus qhia meej rau koj txog yuav ua li cas ua cov no.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Onasemnogene Abeparvovec (Zolgensma) yog kev kho mob gene tshwj xeeb rau Spinal Muscular Atrophy (SMA), muab tshuaj rau hauv cov hlab ntsha ib zaug hauv ib sim neej.
- Txawm hais tias qhov no tsis kho tau tus kab mob tag nrho los xij, nws yog ib qho kev pab zoo heev rau kev tswj hwm qhov kev nce qib ntawm tus kab mob thiab txhim kho tus menyuam lub neej zoo.
- Ua ntej kho mob, nws yog ib qho tseem ceeb heev uas yuav tsum qhia rau tus kws kho mob txog keeb kwm kev noj qab haus huv ntawm tus menyuam (tshwj xeeb tshaj yog teeb meem txog daim siab, lub plawv, thiab cov ntshav).
- Ua tib zoo saib xyuas cov cim qhia tias daim siab puas lawm (daim tawv nqaij/qhov muag daj, zis tsaus) tom qab kho. Yog tias koj pom cov cim zoo li no, qhia rau koj tus kws kho mob tam sim ntawd.
- Nws yog ib qho tseem ceeb heev uas yuav tsum ua raws li cov lus qhia kho mob thaum tuav cov menyuam cov ntaub so ntswg thiab cov khib nyiab rau ob peb lub hlis tom qab kev kho mob.
- Yog koj muaj kev txhawj xeeb txog qhov kev kho mob no, tsis txhob kwv yees, tab sis nug tus kws kho mob lossis pab pawg neeg kho mob uas kho koj tus menyuam.
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Tsis muaj lus teb tau muab tso tawm. Ntxiv koj cov lus tawm ntawm no thawj zaug.
Ntxiv koj cov lus